Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Im also new to this group ,my virl load is in the 3,000000 mil ,my doctor acted like I should all ready be dead ,does anybody eles out there have this hi of a virl load ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hello , For a couple of years I have been lurking at this website. I have posted about 10-12 times without receiving a reply. My most recent post was back in April 06. You can see some of my issues on post numbers 10475 and 12970. To answer your question, yes, my viral load has been as high as 5M and as low as 3K over the years. My SGOT/SGPT has been as high as 500/600 and as low as 50/60. My doctors indicate that these tests are nothing more than indicators of the disease and not related to liver damage. According to the doctors that I am seeing at the California Pacific Medical Center in San Francisco, and my primary doctor Gish, the only way to determine liver damage is through a biopsy. I have a biopsy now at least once a year. Recently I appealed to the California Department of Managed Health Care to have my insurance company pay for my HCV maintenance treatment. The case was ruled in my favor. However, after three days of treatment my platelet count dropped from 62 to 21. Now I am going through more tests to determine if it is safe for me to resume treatment. Everyone with HCV is different because we all have other health issues that come into play. I have found that it is important to do your own research and be involved in your own care. Over the years I have tried various treatments without much success. My faith has been the most important positive element in keeping hope alive. My family, both at home, and at church, have been very supportive. That has been as much of a help or more than the doctors. Discouragement does come, but in looking back, when I first found out that I had HCV, and the prognosis at that time, I should not be alive today. Please know that if you keep looking that there is hope and help in many places. With prayer, Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Ken - what do you mean by " HCV maintenance treatment " > Re: Re; hi virl load > > > Hello , > > For a couple of years I have been lurking at this website. I have > posted about 10-12 times without receiving a reply. My most recent > post was back in April 06. You can see some of my issues on post > numbers 10475 and 12970. > > To answer your question, yes, my viral load has been as high as 5M and > as low as 3K over the years. My SGOT/SGPT has been as high as 500/600 > and as low as 50/60. My doctors indicate that these tests are nothing > more than indicators of the disease and not related to liver damage. > > According to the doctors that I am seeing at the California Pacific > Medical Center in San Francisco, and my primary doctor Gish, the > only way to determine liver damage is through a biopsy. I have a > biopsy now at least once a year. > > Recently I appealed to the California Department of Managed Health Care > to have my insurance company pay for my HCV maintenance treatment. The > case was ruled in my favor. However, after three days of treatment my > platelet count dropped from 62 to 21. > > Now I am going through more tests to determine if it is safe for me to > resume treatment. Everyone with HCV is different because we all have > other health issues that come into play. I have found that it is > important to do your own research and be involved in your own care. > > Over the years I have tried various treatments without much success. > My faith has been the most important positive element in keeping hope > alive. My family, both at home, and at church, have been very > supportive. That has been as much of a help or more than the doctors. > > Discouragement does come, but in looking back, when I first found out > that I had HCV, and the prognosis at that time, I should not be alive > today. Please know that if you keep looking that there is hope and > help in many places. > > With prayer, > > Ken > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 I'm new, not yet on treatment, but it is my understanding that there are drugs that fight the side effects, Procrit for red cells and Neupogen for white cells.? Blessings, Sheena Leep <caleep@...> wrote: Hello , For a couple of years I have been lurking at this website. I have posted about 10-12 times without receiving a reply. My most recent post was back in April 06. You can see some of my issues on post numbers 10475 and 12970. To answer your question, yes, my viral load has been as high as 5M and as low as 3K over the years. My SGOT/SGPT has been as high as 500/600 and as low as 50/60. My doctors indicate that these tests are nothing more than indicators of the disease and not related to liver damage. According to the doctors that I am seeing at the California Pacific Medical Center in San Francisco, and my primary doctor Gish, the only way to determine liver damage is through a biopsy. I have a biopsy now at least once a year. Recently I appealed to the California Department of Managed Health Care to have my insurance company pay for my HCV maintenance treatment. The case was ruled in my favor. However, after three days of treatment my platelet count dropped from 62 to 21. Now I am going through more tests to determine if it is safe for me to resume treatment. Everyone with HCV is different because we all have other health issues that come into play. I have found that it is important to do your own research and be involved in your own care. Over the years I have tried various treatments without much success. My faith has been the most important positive element in keeping hope alive. My family, both at home, and at church, have been very supportive. That has been as much of a help or more than the doctors. Discouragement does come, but in looking back, when I first found out that I had HCV, and the prognosis at that time, I should not be alive today. Please know that if you keep looking that there is hope and help in many places. With prayer, Ken --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 > > Hello , > > For a couple of years I have been lurking at this website. I have > posted about 10-12 times without receiving a reply. My most recent > post was back in April 06. You can see some of my issues on post > numbers 10475 and 12970. > > To answer your question, yes, my viral load has been as high as 5M and > as low as 3K over the years. My SGOT/SGPT has been as high as 500/600 > and as low as 50/60. My doctors indicate that these tests are nothing > more than indicators of the disease and not related to liver damage. > > According to the doctors that I am seeing at the California Pacific > Medical Center in San Francisco, and my primary doctor Gish, the > only way to determine liver damage is through a biopsy. I have a > biopsy now at least once a year. > > Recently I appealed to the California Department of Managed Health Care > to have my insurance company pay for my HCV maintenance treatment. The > case was ruled in my favor. However, after three days of treatment my > platelet count dropped from 62 to 21. > > Now I am going through more tests to determine if it is safe for me to > resume treatment. Everyone with HCV is different because we all have > other health issues that come into play. I have found that it is > important to do your own research and be involved in your own care. > > Over the years I have tried various treatments without much success. > My faith has been the most important positive element in keeping hope > alive. My family, both at home, and at church, have been very > supportive. That has been as much of a help or more than the doctors. > > Discouragement does come, but in looking back, when I first found out > that I had HCV, and the prognosis at that time, I should not be alive > today. Please know that if you keep looking that there is hope and > help in many places. > > With prayer, > > Ken >Ken what was your results from your biopsy ? yes in deed pray is the best thing for us !What was your prognosis in the begain ?Also have you heard anything about this new inhailer, its not on the market yet? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 > > Im also new to this group ,my virl load is in the 3,000000 mil ,my > doctor acted like I should all ready be dead ,does anybody eles out > there have this hi of a virl load ? > Hi, I don't think 3 million is particularly high. I believe 1 mill. to 5 mill. is considered moderate. I had 7.5 million when I started treatment in July. Four weeks later I was undetectable. Same thing at 12 weeks. I'm gen. 2 fortunately. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Hello all, From the response to my post it appears that I may have hit a nerve. I will attempt to answer as many questions as I can in one response. My latest biopsy shows 4/3 or end stage liver disease. Earlier this year there were some signs of decompensation. At this time my liver continues to be compensating. In the beginning there was no way for the Dr. Gish to provide a good prognosis. That is because HCV was not identified until the late 80s and tests were not available until the early 90s. After my first treatment ended in 1994 with failure I was told perhaps 5-10 years. After my second treatment failed in 1998 I was told 3-5 years. This past January I again asked and was told it would be months not years without a transplant or further treatment. After fighting with the insurance company for over a year I finally received a prescription of infergen with ribavirin. Previous posts here tell that story so I will not repeat it again. Yes, there are medications that counteract the effects of treatment for HCV. There are also medications that treat the effects of HCV. The standard treatments, however, are not a cure as some have been indicating at this website. The best that can be said is that the treatments can clear the detection of the virus from the blood. Clearing the virus from the blood according to some of the research that I have read allows the liver to heal. That is why my doctor recommended a maintenance program. Although I did not completely clear the virus, the viral load did drop from 5M to 3K. But, the viral load returned to high levels after treatment. The relationship between viral loads and liver damage is being studied. There are two studies from Europe and one in the U.S. that support the relationship between viral loads and liver damage. Again, actual liver damage can only be determined by a biopsy according to my doctor. What I was prescribed was 15 mcg infergen (interferon alfacon-1) and 1200 mg ribavirin daily. If my viral loads dropped the plan was that I would remain on the treatment for one year. Afterwards I would be taken off the meds for a year. I would then repeat as long as my liver continued to be compensating and I tolerated maintenance. There are other medications on the horizon that may one day provide a cure. Unfortunately, my liver is so damaged that a transplant may eventually be needed anyway. The thought is, however, to extend the function of my liver for as long as possible. In my mind without the treatments I do not think I would have lasted this long. Keep the faith, Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Yes. I'm at stage 2 and my viral load was at 2.5 million when I started tx. I'm geno type 3, I've been on treatment for 28 weeks with my last blood test 4 weeks ago showed viral load was undetectable. I have not had it easy by any stretch. Only 8 weeks left to go. Glenn L. outdoorzman_outdoorman <outdoorzman_outdoorman@...> wrote: Im also new to this group ,my virl load is in the 3,000000 mil ,my doctor acted like I should all ready be dead ,does anybody eles out there have this hi of a virl load ? --------------------------------- Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hey, I also have a viral load of 2.5M and am genotype 3a, stage 2. I also am positive for cryoglobulinemia. I am starting tx Thursday with Pagasys and Copegus. I was wondering what to expect. I work full time and have two small children... so I really do not have much time to feel sick! Kerri L. Glenn <miamiman33133@...> wrote: Yes. I'm at stage 2 and my viral load was at 2.5 million when I started tx. I'm geno type 3, I've been on treatment for 28 weeks with my last blood test 4 weeks ago showed viral load was undetectable. I have not had it easy by any stretch. Only 8 weeks left to go. Glenn L. outdoorzman_outdoorman <outdoorzman_outdoorman@...> wrote: Im also new to this group ,my virl load is in the 3,000000 mil ,my doctor acted like I should all ready be dead ,does anybody eles out there have this hi of a virl load ? --------------------------------- Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hey, I also have a viral load of 2.5M and am genotype 3a, stage 2. I also am positive for cryoglobulinemia. I am starting tx Thursday with Pagasys and Copegus. I was wondering what to expect. I work full time and have two small children... so I really do not have much time to feel sick! Kerri L. Glenn <miamiman33133@...> wrote: Yes. I'm at stage 2 and my viral load was at 2.5 million when I started tx. I'm geno type 3, I've been on treatment for 28 weeks with my last blood test 4 weeks ago showed viral load was undetectable. I have not had it easy by any stretch. Only 8 weeks left to go. Glenn L. outdoorzman_outdoorman <outdoorzman_outdoorman@...> wrote: Im also new to this group ,my virl load is in the 3,000000 mil ,my doctor acted like I should all ready be dead ,does anybody eles out there have this hi of a virl load ? --------------------------------- Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 > > Hi , I was under the impression from what my Dr. has told me is the virus may be undetectable from the blood, but it is still there. You never get totally rid of it even with a liver transplant. I believe my doctor. All Hepatitis stays with you in one form or the other. My daughter is a childrens nurse and she has also verified this to be true. > Connie > Hi . . . I had that same conversation recently with my gastro at the Mayo Clinic. I mentioned a recent study which showed traces of the viral RNA in patients' lymph nodes some 5 years after achieving SVR. He said that the virus in the lymph nodes was dead, and that virtually any viral or bacterial infection you had ever had would find traces in the lymph nodes. He also said that he'd worked on transplants of patients who had reached SVR. Even after those patients had been pumped full of immune suppressant drugs for the transplant, the virus never came back. Makes sense to me--20% of those infected throw it off spontaneously, and if they ever get tested, will take the same qual/quan test that we do, and if it's undetectable the doctors will say they don't have hep C. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 yup and it fluctuates depending on lots of things........ Hi Connie, sally in palm springs --- minnefats97 <no_reply > wrote: > > > > > Hi , I was under the impression from what my Dr. has told me > is the virus may be undetectable from the blood, but it is still > there. You never get totally rid of it even with a liver transplant. > I believe my doctor. All Hepatitis stays with you in one form or the > other. My daughter is a childrens nurse and she has also verified > this to be true. > > Connie > > > > Hi . . . > > I had that same conversation recently with my gastro at the Mayo > Clinic. I mentioned a recent study which showed traces of the viral > RNA in patients' lymph nodes some 5 years after achieving SVR. He > said that the virus in the lymph nodes was dead, and that virtually > any viral or bacterial infection you had ever had would find traces > in the lymph nodes. > > He also said that he'd worked on transplants of patients who had > reached SVR. Even after those patients had been pumped full of > immune suppressant drugs for the transplant, the virus never came > back. > > Makes sense to me--20% of those infected throw it off spontaneously, > and if they ever get tested, will take the same qual/quan test that > we do, and if it's undetectable the doctors will say they don't have > hep C. > > Steve > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~I will say of the L-rd, He is my refuge andmy fortress: my G-d; in Him will I trust.Psalm 91;2~~~~~~~~~~~~~~~~~~~~~~~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Hey Sally, Good to hear from you. I grew up in San Diego. Went to Palm Springs alot as a younger person. Now live in Fresno Ca. far cry from that neck of the woods. Connie nmilover <nmilover@...> wrote: yup and it fluctuates depending on lots of things........ Hi Connie, sally in palm springs --- minnefats97 <no_reply > wrote: > > > > > Hi , I was under the impression from what my Dr. has told me > is the virus may be undetectable from the blood, but it is still > there. You never get totally rid of it even with a liver transplant. > I believe my doctor. All Hepatitis stays with you in one form or the > other. My daughter is a childrens nurse and she has also verified > this to be true. > > Connie > > > > Hi . . . > > I had that same conversation recently with my gastro at the Mayo > Clinic. I mentioned a recent study which showed traces of the viral > RNA in patients' lymph nodes some 5 years after achieving SVR. He > said that the virus in the lymph nodes was dead, and that virtually > any viral or bacterial infection you had ever had would find traces > in the lymph nodes. > > He also said that he'd worked on transplants of patients who had > reached SVR. Even after those patients had been pumped full of > immune suppressant drugs for the transplant, the virus never came > back. > > Makes sense to me--20% of those infected throw it off spontaneously, > and if they ever get tested, will take the same qual/quan test that > we do, and if it's undetectable the doctors will say they don't have > hep C. > > Steve > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~I will say of the L-rd, He is my refuge andmy fortress: my G-d; in Him will I trust.Psalm 91;2~~~~~~~~~~~~~~~~~~~~~~~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Hello all, It sounds like all those that have responded are on the same page. Even after clearing the blood, however, HCV can still come back. I have a cousin that was clear for five years and relapsed last year. The HCV came back after she had a stressful series of events in her life along with another illness. As far as a transplant, although that too is not a cure, I have been told that it could extend my life for up to 10 years when my liver does fail. With the medications perhaps I can put off the need for a transplant for several more years. Thankfully, during my numerous treatments I have been able to continue working. Living with end stage liver disease has its ups and downs. Three times during this past year I came close to being hospitalized. At this time I am feeling better than I have in the past few years. And, the only things that are not in the normal range are my glucose, ammonia, and platelets. I almost framed my latest labs. It is my understanding that the best chance of clearing HCV, or at least giving the liver a time to do some healing, is to receive treatment early. However, I often have heard that primary care physicians do not refer HCV patients for treatment until the liver is more severely damaged. Take care, Ken Quote Link to comment Share on other sites More sharing options...
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